Tag: lucille packard

atta girl Jennifer..

This blog all pertains to this interview we recently had .. please watch if you haven’t. 4 years too late for her. There is more weight to those words than any others in the entire interview for me.. Because I am human.. because I am her mom. and its all 4 years too late for her. .. 4 years too late. That’s because I am her mom.. and I struggle to not see things through those lens. But if I step back. And I remember my little girl I know also. she will wait forever she will fight forever.. Because that’s who she was.. and by donating her tumor.. By raising money to fight DIPG.. we are still letting that be who she IS. She did not lose her battle.. because she is still fighting. I often get caught up in a vicious spiral.. wondering who she would be. What[…]

my question for you..

What does don’t be sorry be active mean? It means I know you are sorry I lost my daughter .. I know you are sorry she suffered.. I know you are sorry she is gone and sorry that maybe even you miss her too… But that sorry. Its not enough. Not enough because she is still fighting.. Her cells .. living and growing pieces of her.. they are fighting .. SHE is fighting but she needs help. Money. Awareness. Help to make both of those things happen. Sorry isn’t enough for Jennifer. And. And for your kids. Sorry isn’t enough for any of our kids. Sorry doesn’t stop the tragedy.. the death…the suffering from happening. It just protects your eyes.. unless.. . it get drops inside your own home and you simply cannot avert your eyes any longer. Let me pose this question. Would you do more? Would you do it[…]

forget

I look at her picture. And I want to grab her out of it. To feel her warmth again..I just want to grab her by the shoulders.. and shoulders. .. her shoulders .. remember oh God.. please don’t let me forget.. her shoulders .. my hands could perfectly cup them. If I moved my thumbs inward I could feel that bony bump right there.. They curved in slightly.. I think . ..I think she hunched just a tiny bit. Oh my God. Is that her? Or is it Jonathan? please .. oh please. jennifer. no. no. no. its like i am losing you again. Piece by piece she was stolen. And now it happens again. As I struggle against my own brain to remember her. Its like a grainy cell phone picture.. We have tally marks on the wall for the kids heights. I walk past and will touch where[…]

..3 years ago..

I feel weaker… more run down than I have the last 2 anniversaries of this … this date, this message stolen from FB.. “After a bit of a whirlwind Jennifer was diagnosed with a brain tumor. We are home now. On Monday we will go in after the team has discussed her case and come up with a game plan.  I will set up some sort of a caring bridges or something site. For now though my older sister Ann and Renee are my “word spreaders” But please know if you want to call or text feel free. If I cant or dont want to answer I won’t.  Tony Kranz would prefer a little more silence on his end. Our number one concern is all of our kids. So if you see them please just be normal and smiley with them. And remember even though JLK is the one with the medical diagnosis all of our kids are[…]

cool kids table

I’m jealous. Of things I never ever would have imagined feeling jealousy over. But cancer has changed me. Losing my daughter has changed me. I see the bonds other cancer families have created through time spent wandering the halls of the hospital and I want that. When I see them getting together.. those surviving and those still fighting a feel like I am walking around the school cafeteria with a tray in my hand.. with only one table to sit at. Most of the tables filled with parents who haven’t carried a cancer diagnosis and they look away and down when I walk close.. Truth is.. even when welcomed I can’t seem to figure out how to lay my tray down and sit anyways. The table is too smooth too shiny .. I see another one and a part of me longs so desperately to sit there too.. Kids that[…]

flash

flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when. But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more .. Because today was sudden. .. flashes.. moments.. horrible and beautiful. Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister. a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she[…]

a bears voice

The holidays have come and gone. We survived. But I don’t really have time to catch my breath. Because now the countdown begins. To the official start of our 3rd year without her. That thought makes me choke and gag. Its a horrible notion. its my vile truth. 2 years ago right now I still had some hope. That maybe.. maybe my Jennifer would be the one. The first to beat this thing. That we would have time for more memories and experiences. That we made all the right choices. Choosing to try radiation. To have Tony keep working so we could take that time later on .. to be with her while she was healthy not in treatment. I will always carry a guilt that I think I pushed for him to do that… To work while I took care of her medical needs.. then take time once we[…]

lucille packard

I’ve made the drive many times in my life .. Yesterday making it memories flooded back. Jonathan needs a hernia surgery. His pediatrician referred us to Lucille Packard. Its scheduled for first thing Friday morning. Initially on the drive yesterday I remembered the evening we first made the trip for Jennifer. Lost trying to find our way to the emergency room. How big and foreign the hospital looked. .. I still can’t believe that just a few weeks later I would know many of the hallways of this place.. That my almost 6 year old would also. How in the beginning we ate at one cafeteria but eventually decided the bigger one.. the one connected to Stanford was better food for her. So we would go there. I had the same breakfast every morning .. after she was out of radiation. I thought about getting it tomorrow. A yogurt parfait with soggy[…]

warrior

Warrior. Warrior mom. Warrior child. It’s a badge given to cancer families in this world I am slowly becoming accustomed to. It has always felt uncomfortable.. awkward for me… I wasn’t sure why. . I just have always known Jennifer wasn’t a a warrior. She was a barely 6 yr old girl who loved to hide from her Daddy when he came home from work and then jump out to surprise him…a little girl who snored like a grown man but always denied it was her. A brown eyed beauty who truly believed in the magic of a princess.    I don’t think any of our DIPG kids are warriors really.. .I think they are more like sitting ducks. Being picked off one by one. I am angry. I wrote awhile ago how it wasn’t a fair fight for her. And I realized this feeling is just an extension of[…]

she has cancer

I miss seeing her in new ways.. I miss her little arms surprising me with hugs.. and the sweet way she would talk to her baby sister. All I have now is the pictures. Sometimes I drown in them. . Often after I write I look for the right pictures to fit in. It takes me a good deal of time to find them since I am always pretty sure what I am looking for.. and then I get lost.. In memories .. good and bad.. I look at the pictures in treatment. How beat down and tired she looked. I can see it so well now. Almost like the outline of death around her. At the time though I couldn’t tell. . somehow I was able to just see beyond the dark circles and just see my daughter. At first her eye was so jarring to me.. but at some[…]

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